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March 3, 2019

Another day of mixed feelings. Julia kind of had a crappy day, but she appears to have made another huge step forward in regaining some physical ability!

She's been throwing up quite a bit, possibly for a variety of reasons (chemo, withdrawal, other meds, etc.) She's been on sodium chloride for a while -- when the cancer was growing out of control, her body wasn't regulating sodium, and it was one of the many concerns. So she's been on the supplement since then, and it's known to cause an upset tummy. It might just be a bit too much in combo with the other stuff. So they dropped the dose down to every 6 hours (from every 4), and they tested her levels in the morning and they were great! So they're going to drop it down to every 8 hours tonight and test again tomorrow. The goal is to get her off this medication completely if her body is regulating it again =) Fewer meds sounds good to me! In general, vitals have been steady: heart rate 120s, ET high 40s, BP 111/79.

She seems to be turning her head to the right(ish) OK, but she's not interested in turning it to the left at all. Well, I should clarify. SHE isn't turning her head, but she is OK with 'having it turned', and then positioned that way for a while. She will gladly rest with it turned to the right, but even when she's tilted toward the left, she wants her head straight or right. We really just noticed it today, so we don't have many thoughts on it. It could be how the fusion surgery healed, or possibly one of her surgery locations is uncomfortable to lay on (she has the pin holes and internal shunt [which is a huge lump] on the left side of her head). But of course my concern always is... cancer. A stiff neck -which was really her only symptom in the beginning- is not something I take lightly anymore!

Today she has moved all 4 of her limbs on demand, several times =) Each one is clearly stronger than they were a few days ago. She can move her entire right hand up to the wrist. She appears to be able to move her entire right leg, up to the thigh, but it's like, millimeters. Her left toes can wiggle visibly now. And she can move her left fingers really well, though not the whole hand yet <3 <3

In the early evening she struggled a bit with her breathing. She generally takes 20-30 breaths per minute, but she was steadily dropping down to about 10. Which I guess isn't always an issue as long as your oxygen saturation is still good (I think they like to see 98-100% oxygen sat). She was hovering in the high 80s, and setting off all kinds of alarms. They tried all their normal fixes, such as suctioning her mouth and trach, checking the vent/leads, changing her position, etc., but she wasn't really recovering on her own. So they put her back on "night time" settings earlier than normal. This is just a slightly higher amount of vent assistance: some extra oxygen, pressure assistance, and extra forced breaths (if required). They think she just got too tired from such a long day of being awake / puking.

Things looked better once the vent kicked in, and she looked much more comfortable.

SO comfortable, in fact, that she felt like putting some EXTRA EFFORT into watching her cartoons!

DO YOU SEE HER RIGHT EYE!?!

IT'S THE SMALLEST PEEK EVER, BUT IT'S THERE!!

We THOUGHT we saw the tiniest little sliver two days ago, but we couldn't be sure. I brightened the shadows of this picture a bit, just to see it better, and that's definitely a little pupil!

For all of Julia's newer followers - this is (possibly!) a HUGE DEAL. Way back on November 14th, she went cross-eyed in the right eye. At this point we had already been at CHOP for about 2 weeks, and we had just received the aggressive cancer diagnosis. This was the first actual physical symptom, other than a stiff neck, that something was wrong. Apparently most childhood brain cancers are diagnosed after initially going to the ER due to 'funny eyes' or persistent headaches. So if we hadn't already been at the hospital, we certainly would have gone.

Anyway. So the cancer started affecting her right eye in mid-November. The next day she went in for her tumor removal surgery, then her fusion surgery, then 5,000 complications in a row... Come the end of December, she was really just starting to wake up from everything. But in all of my updates around this time, you can see her right eyelid getting heavy looking. Over the next few days, it closed and didn't reopen. The pupil also stopped responding to light.

As of today, the pupil still is not reacting at all to light. And the nurse I spoke with isn't sure if the eyeball ever moves (it's always looking straight ahead when the do their eye checks). And her eyelid has been pretty puffy, so it's not clear if anything is moving underneath, like when she moves her left eye around. So we just don't know.
But, it's SO NICE to see her eye open, even just a fraction of an inch! The last picture I have of that eye BARELY cracked open was January 1st. So it has been **61 days** since she's opened it!!

We have no idea if it works, or what sort of vision quality she has... but she seemed pretty committed to watching her cartoons with 1.25 eyeballs this evening <3 <3 <3